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Ocrevus vs. Tysabri

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    Ocrevus vs. Tysabri

    I have successfully been on Tysabri for just over 10 years. My fairly new neurologist is recommending that I change now to Ocrevus. My latest MRI looks good, he says. My JC Virus numbers range these last 10 years as low as .19 and as high as .33, like a rollercoaster. I drive about an hour one way into the clinic for my infusion. I think he might be pushing for the change maybe because of the convenience of less visits for the IVs or either attempting to get all his patents on board for the same treatment--Ocrevus. I have read good things about Ocrevus, but I am happy and feel as good as can be with MS on Tysabri. Why change a good thing? I got that reply from my last neuro when I questioned him about changing treatments.

    My neuro brought this up in July. My follow-up is in October. If he thought I needed to change or there was a problem, should he have not sped this up a bit more, the potential change? At this point, I am thinking about cancelling my appointment.

    #2
    questions...

    Hi there!

    Sounds like your neurologist wasn't clear as to why he/she thinks you should switch dmd's. I would maybe use that October appointment to get those answers and say to your neurologist what you've said here, that you're happy and seem to be doing well, so why change?

    I don't know anything about Ocrevus, but I do know, from experience, that changing dmd's can be stressful. So in order to do so, we need all the facts to make the best possible decision for ourselves.

    Not sure I was much help, but I do wish you all the best and hope you get some clarity on the situation.

    Starla
    DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

    Comment


      #3
      Hello,

      A JCV titer range of .19 to .33 is EXTREMELY narrow and is exceptionally low.

      Here are the facts...

      .2 and under is considered negative for JCV.

      .2 to .4 is considered indeterminate.

      Above . 4 is considered positive, however, cases of PML under.9 are extremely rare so many neuros feel pretty safe at that level.

      That said, the reason some neuros prode patients to switch from Tysabri is because of the PML risk. However, in IMO, they discount the risk of MS getting worse, sometimes much worse on another drug ESPECIALLY for those who are having good success on Tysabri. Tysabri is sometimes so good that it lures people into thinking their MS is not so bad after all. Then they switch off and find out that Tysabri was keeping it at bay.

      Ocrevus is so new, why do people risk their good health on Tysabri on a med with only a relatively short track record? Why not wait for the clarity more data provides?

      I suspect many wish they hadn't.

      Comment


        #4
        Apology that my previous post was incomplete in the closing sentence. It should read... I suspect many wish they hadn't switched..

        For me, it is a recognition of how crippling fatigue can become with MS. Although Tysabri and Ocrevus are both very, very good at slowing or halting MS, some people are experiencing increased fatigue when they switch from Tysabri to Ocrevus. That, along with a yet to be quantified risk of infections on Ocrevus is what concerns many about this otherwise very, very effective medicine.

        Comment


          #5
          Much appreciated!

          Originally posted by Starla View Post
          Hi there!

          Sounds like your neurologist wasn't clear as to why he/she thinks you should switch dmd's. I would maybe use that October appointment to get those answers and say to your neurologist what you've said here, that you're happy and seem to be doing well, so why change?

          I don't know anything about Ocrevus, but I do know, from experience, that changing dmd's can be stressful. So in order to do so, we need all the facts to make the best possible decision for ourselves.

          Not sure I was much help, but I do wish you all the best and hope you get some clarity on the situation.

          Starla
          Sorry, that it has taking me so long for my reply to your post. It has been a weirdly busy week. My neuro appointment was rescheduled for tomorrow. I have a list ready for the appointment. Plus I had my infusion a week ago. I asked some of the nurses at the clinic about it. I found out that the PML test will no longer be required if I change to ocrevus, therefore, no more JC virus tests. I made a decision. I will tell the doctor that I would like to stay on tysabri until the JC virus comes back as a positive. Obviously I will have to change then.

          Thank you, Starla. You made me think more about it.

          Comment


            #6
            Much appreciated!

            Originally posted by Myoak View Post
            Hello,

            A JCV titer range of .19 to .33 is EXTREMELY narrow and is exceptionally low.

            Here are the facts...

            .2 and under is considered negative for JCV.

            .2 to .4 is considered indeterminate.

            Above . 4 is considered positive, however, cases of PML under.9 are extremely rare so many neuros feel pretty safe at that level.

            That said, the reason some neuros prode patients to switch from Tysabri is because of the PML risk. However, in IMO, they discount the risk of MS getting worse, sometimes much worse on another drug ESPECIALLY for those who are having good success on Tysabri. Tysabri is sometimes so good that it lures people into thinking their MS is not so bad after all. Then they switch off and find out that Tysabri was keeping it at bay.

            Ocrevus is so new, why do people risk their good health on Tysabri on a med with only a relatively short track record? Why not wait for the clarity more data provides?

            I suspect many wish they hadn't.
            Myoak,

            Sorry, Myoak, for the late reply. It has been a crazy few weeks since I was on this last. Since the post. I had my infusion this last Monday. I spoke to some of the nurses at the clinic that day. Also, quite a few other patients have told me that they switched to Ocrevus. Good results, but still early. Most everyone was just on their first or second infusion with Ocrevus. I also found out the the PML is not required if you change to Ocrevus. Therefore, no more JC Virus tests. I have a list of questions for my neurologist tomorrow. I am pretty sure he will agree with me. That I do not need to change until I test positive on the JC test.

            Thank you for your response to my post. It made me think about it more.

            Comment


              #7
              Botox?

              I had my appointment today. Why do I make myself so worried about nothing? My neuro suggested exactly the way I needed to hear it. My numbers from the JC Virus are good. My last MRI showed no progression. He said "why change". Now I have something else to think about. He had me walk a couple of times in his office. He saw how my gait was. He even tested my left (weaker) leg. He is thinking the Botox might work for me. Now to research that. I know nothing about botox. The cost is a concern. I am on medicare. Now just going to wait for them to call me and give me more information.

              Comment


                #8
                I looked into it, but once I learned it was 10 needles in my leg that had to be repeated every 3 months, I said, “Thanks, but no thanks.” She completely understood, and yes, the cost is ridiculous and this was 4 years ago!

                Comment


                  #9
                  I don't know much about botox but wanted to chime in not to neglect considering dose extension if you do turn JCV+. Studies show you can reduce PML risk by 88% - 94% extending time between doses with little to no change is your MS.

                  Comment


                    #10
                    Tinytimsmom,

                    I wanted to add that you might want to look at acupuncture. My leg issues dealt with pronation of my right ankle. Once I turned a "thumbs down" to botox, I did acupuncture every two weeks for a year, and it did correct the problem. With a skilled acupuncturist trained in the Chinese method, I do believe you can see improvement. Once again, after a year, the pins in the ears got to me (although I was fine for many months), and I finally stopped. I paid $55 per treatment, but I'm sure cost varies with location. It is NOT covered by Medicare.

                    Comment

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